Social Distancing Tips from a Professional

First of all, if you have been practicing social distancing despite being young and healthy – THANK YOU. I am the type of person you are doing it for, and everyone I’ve seen making those tough decisions to cancel events and trips, stay in, and isolate yourselves I sincerely appreciate it.

(Side-note: as someone who was supposed to see Hamilton tomorrow night, I feel your frustration, sadness, and anger. But it’s the right, smart, best thing for absolutely everyone).

If you’d like a health update on me, I’ve written a quick one here.

Otherwise, I thought I’d dedicate a post to some tips to make social distancing and self-isolating a little bit easier. As someone who had to stay in the hospital, couldn’t leave my floor (or even floor section), was only allowed a few visitors, and wasn’t working for a month, and further as someone who has self-isolated specifically not to get sick for the past two years since leaving the hospital, I figured I could offer some advice.

As a note – I do not have kids, which obviously gives many an added challenge in these times. I’m sorry I can’t help there, because I can’t imagine having to juggle watching little (or big) ones on top of managing these ever-changing, difficult times.

If you’re at home, that’s a great place to be. Home is cozy and you have all your creature comforts and you can not wear any clothes if you feel like it.

The obvious ways to pass the time:

  • Read!
  • Watch TV
  • Watch movies
  • Play board games
  • Play video games

When I was in the hospital, I had a pretty strict routine (mostly because hospitals give that to you with when they provide you meals, meds, checkups, etc.) Lights were out by 10-11, and you were woken up at 5 (lol, no thanks) and again at 7-8.

With that in mind, I found I ended up making my own routines around this. Many are working from home, so that adds in the routine for the day, but at night you can try to make new routines around not going out. Here are some ideas for that:

  • Make dinner
  • Do online yoga/meditation
  • Watch something (light and non-stressful, preferably)
  • Do a puzzle instead of scrolling and refreshing on your phone – either physical or download a puzzle app – that’s what I used in the hospital and I found it to be a great wind-down activity before bed
  • Do other games on your tablet/phone – soduku, crosswords, etc.
  • Online courses – learn something new!
  • Start knitting/crafting projects you’ve been meaning to try
  • Journal – I found journaling and tracking things helped me feel more in control in a situation that was mostly out of my control
  • Clean – including a wipe down of heavily-touched surfaces
  • Bake something
  • Take a long, relaxing, phone-free bath – light some candles, pour some wine or brew some tea, and bring a book
  • Go for a walk (this is assuming you are not quarantined, and just social distancing – keep your distance from others while out and about, but if you are able to get fresh air I think you should. This could of course change as the situation is changing frequently and rapidly, so if it does, certainly don’t take this advice over medical/professional advice)
  • If not a walk – move your body! Dance in the kitchen, do 20 jumping jacks, just move that body a little bit, each and every day

Those are just a few ideas. Really puzzles helped give me something to do, and I could easily pass a couple hours working on one puzzle on my iPad while watching something, (and I wasn’t then falling into a google spiral).

Personally during these particular times, a few things I’m trying to do is only check the news/social media a couple dedicated times a day, so I can stay informed while also not spiralling into anxiety. This is a challenge and something I am continually working on, but let me say that it really helps when I’m able to put my phone down and just read or focus on something else.

Marco Polo app! This app has been incredibly helpful in not making me feel isolated the last year or so. It’s a very low pressure way to send video messages back and forth with your friends. I have a group I talk to on there and seeing their faces and hearing their voices (rather than just reading text) is incredibly comforting and lovely.

Another great way to stay in touch is Slack. A common workplace communication tool, it’s also been an app my friends have used over the past couple years and has made me feel part of a group on my loneliest days. We also have certain fun challenge channels, etc. that can add a bit of extra excitement.

Off the top of my head, those are the best ways I have passed my time over the past couple years. It is of course an adjustment, but take advantage of this time to catch up with loved ones on the phone, to relax, and to catch up on some things you’ve been meaning to get to but have been too busy to do.

The one thing with this is that with most people practicing social distancing, you’re less likely to experience any fear of missing out, which is a tough thing mentally when you are the only one who can’t go out and do things. So that might help some a little bit, at the very least.

And a few work from home tips, should you need them:

  • Have a separate work space (if you are able) – even just a desk/table/place that isn’t your bed. If you can have a dedicated work space it will make it feel like a change when you get up in the morning.
  • Get changed – I don’t mean into work clothes, it can be from one pair of PJs to another for all I care, but just changing, preferably showering in there, it will help get you into a fresh mindset for the day.
  • Same note from above – move your body in any way you are able. If you can, get up and stretch, go for a walk, dance for five minutes, do some jumping jacks, I think once an hour if you are able, but at least a few times a day.
  • Set your hours with a lunch and coffee breaks. It is easy to overwork when you WFH every day. You lose track of time, you get caught up in something, and with no commute home to make it’s easy to work over time. And once in a while this isn’t bad, but everyone is already maxed out on their stress, so you do need to unwind.
  • Turn on your camera when on a video call, it’s another way to feel less isolated.

These are stressful times, and things are changing very quickly. But the best we can do right now is stay isolated, wash your hands, and stay as calm as possible. Put down your phone and pick up a book and your brain will thank you. And stay inside and I will thank you (from a distance).

Quick Update

It’s been a while since I’ve written anything, so I wanted to give a quick health update.

I haven’t been doing any posts because there hasn’t really been anything to update on – which is great!

I am officially done 20/24 cycles, beginning 21 (hopefully) on Wednesday. I am also done my lumbar punctures, which is a massive relief for many reasons.

The past couple cycles have been challenging. I’ve been beyond exhausted, nauseous, and the pain coming off steroids has been nearly unbearable. I’m working with my doctor to hopefully find a balance to get through these last few cycles. It’s been a tough few months, but I’m lucky to have a strong support system to get me through the worst days.

Of course, with everything going on my anxiety has been ramped up. But so is everyone else’s, so I am not unique in that way.

On that note – thank you to everyone who is social distancing, it’s the right thing and you are helping me! I’m also writing a post on trips for social distancing/self-isolation (from an expert like myself), so look out for that.

As usual, keep things as light as you can during these times. It’s tough but it’s the only way to get through. Put your phone down and pick up a book instead! I promise it will help.

16 Down, 8 More To Go

I swear that I have meant to write an update for approximately 2 months now. Oops.

Since my last update 5 months ago now (another oops), I have reached past the halfway point of Maintenance, have had another lumbar puncture (1 more to go!), and have started a new job (sort of).

Cycle 16 started this week, so I am in the midst of it, but once it’s done I will have 8 more to go, including 1 more lumbar puncture. There will still be plenty of doctor’s appointments and follow ups in the months after treatment is done, but slowly and surely it feels like the end is becoming clearer and closer.

About a month and a half ago I switched roles at work (from running the Australian and New Zealand store to looking after Canada – same job but a bigger responsibility). While it’s been fun and exciting it’s also been challenging and stressful. However, it’s been nice to have so much focus going into something not related to treatment.

Our perfect little pup Harriet is still perfect and such a quick learner, just incredibly smart and loving and adorable. We’re preparing for Christmas over here, with parties and secret santa’s and the like. Plus – I have tickets to see Hamilton in the new year, so life is feeling pretty sweet at the moment.

Oh and my hair is long enough that I can do little mini-ponies! How thrilling that has been!

That’s about it for the updates over here… sorry again for the delay, but life has gotten busy in very good ways. I hope the same to you!

Happy holidays and new years to everyone!

It’s Summertime and the Livin is Easy

Sorry it’s been awhile since an update, but the good news is it’s because there’s really nothing to report on over here.

I have finished 8 cycles now (of 24) for my maintenance phase. So I am 1/3 of the way through, and if I weren’t to have any delays between now and the end, I will be done treatment by this time next year. I had 3 weeks of delays in April/May due to elevated liver numbers (guess the wine I had showed), and then low neutrophils. But otherwise things have been going along smoothly.

February through now has been filled with a lot of appointments and tests, and while they’ve all been normal and good, it’s been a lot of stress. Now they’re all done and I feel like I am ready to enjoy my summer.

Most importantly – I’ve felt pretty good. Even great sometimes. Some weeks, as usual, are worse than others, but for the most part I’m feeling better and better all the time. Some would call the feeling ‘normal’. It’s a nice place to be when your biggest issue is feeling almost too normal, and having to remember that you’re not quite there yet.

I’ve started going back into work a bit more. Hoping to make it a more frequent venture, and it’s been really nice and helped me get to that normal feeling. Just socializing throughout the day is a very nice change.

Speaking of – I went swimming (head under water, cannonball jumping, handstand competition type swimming) for the first time last weekend and it was absolutely as magical as I was hoping it would be.

In other personal news, Symon and I got a puppy named Harriet, and she has brought so much joy and love into our lives. I recommend anyone under stress spend some quality time with a schnoodle puppy.

Hope everyone has a cool, water-filled summer!

1 Year In: Complete Remission

Well. It’s been a wild year.

Exactly one year ago today I was diagnosed with Acute Lymphoblastic Leukemia/Lymphoma.

Exactly 1 week ago today my doctor said the words “complete remission” to me.

What a difference a year makes.

A year ago I felt the healthiest I had ever felt in my life. I was working out (sometimes twice a day), plus walking or biking to work every day. I was eating healthy and drinking less. I slept well and took care of my mental wellbeing. I felt amazing. Then everything flipped.

I went in to see my doctor (by myself) for my biopsy results on an innocuous Thursday morning in February. Nervous but also thinking about all the stuff I’d have to do when I got back to the office. She called me in from one room to the other where she told me “well, it’s not the news we were hoping for. You have Acute Lymphoblastic Leukemia”. She proceeded to answer what questions she could, and told me she had already spoken to a doctor at Princess Margaret and I would have to go in immediately the next morning for a day filled with tests and information. She said to bring a lunch and my mom because it would be a long and tiring day. She told me I would lose my hair. She told me that I’d be off work for at least a month, but to not look up how long the treatment plan itself would be because that would be daunting and until we had full results after the next day’s tests there was no point in overanalyzing and worrying.

I went back to the office after that meeting, in utter shock, and managed to book myself a meeting room where I called my mom and then brought in the people I needed to tell that I would be leaving work indefinitely that afternoon and I had no clue when I’d be back. After telling a couple people, saying “so I just got some news…” started feeling more normal, which was very weird.

That was probably one of the scariest days of my life.

Cut now to February 15 of this year and back to those “complete remission” words. I’ve technically been in remission since at least the summer, but we didn’t know if the little bit of mass that remained in my chest was dead tissue or active (cancerous) tissue. The only way to know would have been through a Pet Scan, which I didn’t think I’d have until after treatment – because chemo can light up as false positives on these tests, and until my treatment is done I won’t have a long enough break between chemo sessions to guarantee that won’t happen.

But about a month ago my doctor told me she wanted to order a Pet Scan to check. If it came back negative – Great! We can all feel real good about that. If it came back positive, we’d take it with a grain of salt and go from there, possibly throwing in a couple more treatments to really nail things and keep a super close eye on it.

(Even the technician who injected the radioactive serum and asked me all the required questions before the scan called my doctor to double check she was okay with me doing the scan considering I’d had a chemo treatment only 5 days prior.)

The weird thing about the online Medical Portal I’m on is that you can see your results before you talk to your doctor. Which can sometimes be good but other times be super stressful. These results came back the same day and I don’t think I’ve been more nervous waiting for them to come up. (Even my doctor said she held her breathe as she clicked through). But they looked great to me. The only thing that showed up as abnormal was my ovaries – but they had written that it was likely functional (a contradictory statement, since functional means normal).

I called my doctor the next day to discuss the results and she called me back the day after (so test on Tuesday, call on Thursday, bless Canada’s healthcare system), and she said the results were ‘fantastic’ and exactly what we wanted to see.

But the words I’ve wanted to hear came a week later in our actual follow up appointment, when she told me I was in ‘complete remission’. (She also said that she doesn’t think the ovaries thing is anything to worry about [especially since it was both ovaries]. It is most likely just functional and poor phrasing on the part of the technician.)

This past year has taught me so much about myself, life, gratitude, love, and positivity. I felt like a generally positive, grateful person who didn’t take her life for granted prior to this, but I now believe I am one of the luckiest people out there.

That isn’t to say that this year hasn’t been challenging (obviously). I try to remain positive and happy as much as possible, and I certainly try to put that attitude out on social media or out to acquaintances. But this has been tough beyond belief. There have been so, so many tears. I’ve yelled – at myself and others (sorry). I’ve felt defeated and exhausted and depleted. I guess this is to say that when we have to, we’re all able to be as strong as we need to be, but that doesn’t make it easy.

Looking back, I’d say that cutting my hair was still the most difficult day emotionally and mentally for me. And throughout the intensification phase, having your body not be your body any more is beyond challenging. Not being able to walk up a flight of stairs, do a push up, or touch your toes when all of those things used to be a light warm up before a workout is so difficult to wrap your head around. Chemo brain is frustrating. Roid rage is very real. Moon face is realer. But slowly my old body is coming back. I did 20 (small, easy) yoga sessions at home in January. In October I could barely do a downward dog. I’m proud of my strength and looking forward to building on it, little by little, every day.

My support system these 12 months has been incomparable. I cannot believe the amount of people I have received constant, unwavering support from. To you, and you should know who you are, I say THANK YOU. That is the understatement of the year, but I honestly do not know what to say to properly convey just how grateful I am to all of you. I truly would not be where I am now if it weren’t for you. You are all incredible.

Every day I feel more like myself. I’ve been working full-time from home since the beginning of January, and that has made me feel like me. I’ve now gone into the office a couple of times, and that has made me feel like myself even more. As spring time comes and flu season recedes I look forward to hopefully visiting with friends and going out a little bit more. While working from home certainly has its benefits, it does get lonely, and being around people during the day can be so lovely. (But I also will still use this as an excuse every time I want to stay in and watch Survivor with Symon instead).

The other piece of good news I received from my doctor was that I can be a little more lenient on what I eat. Which means I have consumed an unhealthy amount of sunny side up eggs in the past week. It is my favourite food that I have missed SO much over the past year. Any egg I’ve seen on instagram in the past 12 months has been torture. I can’t wait to go to a restaurant and order what I want soon.

I’ve been dreading and looking forward to this month, with all the memories from last year but also reflecting on how strong I’ve been and all I’ve been through. Obviously it’s been much better than last February, and these results really put the cherry on top. I hope 2019 continues to kick 2018’s ass. So far, so good.

What’s next?

Another year of treatment (65 more weeks to be exact). Maintenance phase will continue as is – hospital/doctor visit once every three weeks + a delivery of chemo the following week (if you need some methotrextrate I’ve got some in my fridge right now), and visiting a clinic for those two weeks in between the hospital visit. The clinic is EXTREMELY quick compared to the hospital. Door-to-door it usually takes 45 minutes or under. The hospital is anywhere from 4-7 hours depending on wait times and if you need a blood transfusion.

Also next – hopefully a dog. If you come across any schnauzers, doodles, or other hypo-allergenic dogs for adoption (preferably more than a year old) please let me or Symon know.

Sorry for such a long post, and thank you everyone for the congrats and well wishes over the past week – it’s been a crazy one and I don’t know if it’s even hit me yet, to be quite honest. I read all your comments and appreciate each and every one of them.

Now I’m going to go enjoy some more runny eggs and maybe have a glass of wine (don’t tell my doctor) to celebrate this anniversary and being in remission.

Love and positivity always,

Deandra

See You Later Intensification, Hello Maintenance šŸ‘‹šŸ¼

Well I won’t say that these past 8 months have been easy. Definitely much harder than I originally suspected. The summer was difficult, and there were some low days but also some really great days.

Getting my line out was a huge milestone that really changed things, but I also finally got a lovely taste of the nausea I was so terrified of from the first time I heard the words “cancer” and “chemo”.

But I am happy to report that with just 4 weeks of total delays throughout the last 8 months, the 30-week intensification phase is officially complete! šŸŽ‰

So what does this mean? I no longer have to get a shot of L-Asparaginase (which is not a fun drug to get injected into your butt every week), and can also cause blood clots, which means I’m also done giving myself an injection of blood thinners every single day. So no more waking up at the same time just so I can inject myself with a needle (another not super fun way to begin every single day).

Those are some major milestones.

I’ve now entered the 72-week maintenance phase, which I keep being told is much easier than what I’ve experienced so far, but I won’t get my hopes up until I’ve gone through a few cycles of it. I’ve had my first chemo on Friday for this phase – which was just an IV chemo of Vincristine (which I’ve been getting since the beginning), and Methotextrate (which I’ve been getting for the past 9 weeks of intensification).

I will still receive the Methotextrate every week. TBD if I’ll have to go into the hospital for it, but I’ve been told I could get home care for it, which would be extremely ideal to not go to the hospital every week (but even if I did, they apparently would have the drug ready for me, there would be no blood work, I could go after work at 5pm, and be in and out fairly fast).

Speaking of – I officially start full time work hours tomorrow (from home still through flu season). 8 hours a day/5 days a week. It will be a slight adjustment but one I feel ready for (going from currently 6 hours a day/4 days a week).

December was busy, but I was lucky enough to get some socializing in, and for the past two weeks I’ve felt really fantastic. It was so great to spend Christmas feeling mostly like myself, and to go into this new phase and new year feeling very strong, healthy and like me. Just hope I can keep this feeling going.

Hope everyone else has started the new year on a good note – let’s crush 2019! šŸŽŠ

About Time For An Update

Haven’t been writing here much as I haven’t had much to report on lately. After getting my line out, I had a few weeks of feeling really great, and since then it’s been about 6 weeks of feeling not so hot.Ā 

I had a CT Scan to check the status of things last Monday evening, and got the results on Friday. The mass in my chest is down from 1cm in June to 0.8cm now, so moving in the right direction. As my doctor has been saying since it was at 4cm, this could just be scar tissue at this point that will be there forever, but regardless, the fact it’s going down in size is what we want.

Everything else seemed to look good on the scans, so overall feeling good about that.

I’m now done 27 weeks of this 30 week long phase. Unfortunately these last 3 weeks are currently delayed as my platelets are a little lower than they’d like them to be. My doctor thinks it could take a couple weeks for them to recover enough to continue with the chemo.

While I do just want to finish up these 30 weeks, I’m trying to look at the bright side and use this time not being injected with drugs to work out and eat and sleep well so I can hopefully regain some strength and finish up the 30 weeks strong and not feeling too poorly.

Meanwhile I’ve upped my work hours to 4 days a week and 6 hours a day, which was tough on the weeks I wasn’t feeling great, but last week felt like the perfect amount of time in a day. Honestly, it forces you to really hunker down and get your work done, but you have just enough time for everything. I think we should all work 6 hours a day, just saying.

And that’s where we’re at!Ā 

Side story: while getting out of the car after grabbing groceries today, an older woman stopped walking and turned around and first asked if I was Portuguese (no), and then came up and said well I want to give you a hug. I politely said “Oh I’m sorry, I can’t hug you, I’m sick” and she said “I know I can tell” (and pointed to my hair – or lack thereof) “I was sick, too, six years ago. You are very strong. You must remain positive. Put on music and dance, watch movies, read books, just remain happy and you will get through this. I’m 77 and my husband died when he was 56 and left me with 2 kids. People ask me how I survive and it’s because I’m strong and I stay positive. You are strong, too.” Then she patted me on the arm and we said goodbye.

So heed her advice with me and remain positive, put on some music, and dance!

Delays + One Fine Day

At this point I can certainly say I did not intend to wait this long to post a new update. My central line (which was one of the very first thing post-diagnosis to go into my body on March 2) was supposed to be removed September 7.

Unfortunately, before that could be removed I had to have one last dose of a specific kind of chemo, which was delayed due to two weeks of low counts.

The good news was: that was my first delay! Apparently that is rare – most people would have hit delays before this. So that’s good. It’s just too bad it had to be on such a momentous cycle that the first delay happened.

The specific count that was low were my neutrophils. They need to be at a 1 to continue and were at a 0.7. So my doctor had me come back the following Wednesday, so if they were low again I could take shots that would help boost them. Unfortunately they were down even lower to a 0 – the lowest they have been.

Neutrophils help fight infection, so this wasn’t great. So my chemo was delayed again, and my Doctor thinks I had a slight respiratory viral infection, and any neutrophils my body was producing were going to fight this infection. By Sunday my sore throat was gone, and when I got my counts done again the following Friday – voila! Neutrophils at 5.6. I’ve honestly never seen my Doctor happier to give me good news and it was a very happy moment.

So Friday I received my chemo, and today I went in and got my line removed!

This is an emotional and happy day. It has not quite hit me yet that I don’t have this long line hanging down my chest any more. It will take a few days and returning to normal activities for me to really comprehend it.

When I came home from the hospital I wrote about not taking little things and freedoms for granted, and I’d like to reiterate that here as well. Getting my Hickman Line in was life changing and the first real way IĀ felt my disease and like I was no longer myself. This line hung down to past my belly button. I was constantly worried about infection, or about the clamps being open. If it pulled or if I tugged a shirt the wrong way it was so supremely uncomfortable.

I couldn’t shower properly (can’t get it too wet), couldn’t bathe or swim (and if you know me I am a FISH), I couldn’t lift anything – I mean I dropped my phone behind my couch and had to leave it for a day because I literally couldn’t lift my couch two inches out to reach it. I couldn’t sleep on my stomach, or even really on my right side (the side it was on). Yoga – out. Lifting my bike – out. Not to mention it was just right there for all to see.

It was obtrusive and ugly and uncomfortable but by the same token it did make my life easier. I’d like to Marie Kondo-it away by thanking it for the service it did me – in the hospital it hooked me up to constant fluids, getting blood out every week meant no pain, and my IV chemo didn’t burn or hurt and I barely noticed it go in. So thank you to my line for all the good it did for me.

On the flip side – goodbye! Bring on the pokes and pricks (we’ll see how I feel about that very soon hahah).

Now I am looking forward to getting my body a bit more active, and feeling, even slightly, more like myself. You can see pictures of me + my line (or lack thereof) over on my Instagram.

Week 16 – More than halfway there

At least through this phase! Officially done 16 treatments of 30, including my one lumbar puncture for this phase. Still 2 more years when this is all done, but I will take my wins where I can get them.

Even better news – yesterday didn’t take nearly as long as I expected it to (a mere 6.5 hours), considering I had blood work, a doctors appointment, lumbar puncture (after which you have to lay down for 30 min), and chemo (after which I have to wait an hour). And overall I’m feeling okay, just have to take it easy this weekend – can do.

I also have an appointment booked to remove my central (hickman) line on September 7, which, I am not being hyperbolic, will be life changing. I already have a list of the things I want to do when I get it removed (examples include: taking a full bath, going swimming, sleeping on my stomach, yoga, lifting heavy things). If you have more ideas for me, send them my way!

So overall I feel in good spirits right now. I was anxious for yesterday/this week, and now that it’s done I feel motivated and ready for the next half of this phase.

For today, I’m going to head back to bed and the AC of my bedroom with my Beyonce September Vogue, a nice candle and a cup of tea #thedream.

Summer Time, Feeling Fine(ish)

Oops, slowly getting worse at this whole blogging thing.

The main update is that I had a CT scan at the end of June, which showed that the mass in my chest is down from 2 cm all around to 1 point something cm all around. There’s a good chance this is just scar tissue at this point, but there won’t be a way to know definitively without a PET scan (which we can’t do until I’m at least 4-6 weeks off chemo, which I won’t be for another couple years), so for now, this is good news!

Last week I had my first blood transfusion, which I was always scared for, but it went fine. I didn’t have a reaction, and it probably gave me the energy I’ve felt the past few days.

Otherwise, things have been the same as usual, which can be rough, especially in week 2 of my 3 week cycles. That week brings extreme fatigue, nausea, indigestion (so bad it’s made me vomit from eating too fast, yay!), mouth sores, and just a general feeling of UGH.

But to end things on another positive note – I felt great the past few days, which is helpful since I was in Ottawa with Symon. We had a blast, and I walked 10,000 steps in a day for the first time since February.

See you all here in another couple months when I remember to write something.